It’s been a while since I wrote my blog, but as we are now in self-isolation due to Covid-19 I thought I would get my pen to paper, if for nothing else, to download some of the literally thousands of thoughts that are speeding around my head, bouncing off each other.
I struggled a little to confine those thoughts for purposes of this blog – I don’t want to be all doom and gloom, but also I don’t want to get all preachy about what a great opportunity this is to connect with oneself and pursue that long lost ambition to learn to play the ukulele or whatever. It may be great opportunity to do just that, but for many, like me, these days of C-19 isolation are an anxious wait for good news. The snot season is often a stressful time for families like ours in the best of times, but a new virus plus reports of over stretched healthcare system quite frankly freak me out.
So I thought I’d share my attempts to shepherd these unruly thoughts in my head bouncing around my head.
I’ve been trying to rationalise figures and statistics: We are reassured how children are generally not badly affected and yes – this is great news. I eagerly devour statistics showing how children are in minority of those requiring treatment, but do not find the peace in it that I crave. Too many uncertainties remain to lessen my worries: How does C-19 affect kids with pre-existing conditions? How would Freya do if she caught it? If the hospitals were busy would the doctors have to prioritise those kids who don’t have pre-existing conditions?
I admit, COVID-19 news punctuate my days: the morning email with the newest Government advice and policies; the afternoon announcements of the latest measures and the sad figures of how many have succumbed to the disease; the evening news decidedly pointing towards the end of the day. Add social media and it is easy to go COVID-mad.
So I have been on a mission to distract myself: Our fridge is full of fermented veg. I am reading books and binging on Netlix. We are actively home schooling Freya. I do yoga and meditate daily. On top of it all I am still working most days. In fact, most days I feel busier than when I was allowed out!
But it’s hard to ignore the dark shadows this pandemic casts on our lives. Being busy and having a daily routine help to cut down the times my fears spiral out of control, but do not make them go away. At best I feel as if I am masking them and this, I can tell you from experience, generally does not work for me in long term
Parents of medically complex kids have to live with fear every day of our lives. Even in pandemic-free times we worry about the limits of medical science and at what point doctors won’t recommend further treatment. We worry about the limits of our own strength and ability – what will happen if our most won’t be enough? And however much we do not want to think about it we worry about end of life situations, it is something on our radars whether we like it or not. All of these fears are magnified in times like these and it is easy to feel out of control.
Let me share a few realisations that have helped me living with my fears and uncertainty of Freya’s prognosis.
Firstly, I’ve been trying to face my fears, in small, manageable steps. If I have learnt one thing in the past years is that I cannot overcome my fears unless I face them. Being brave is not about not feeling fear, but about the courage to look at them, to sit with them.
Secondly, I have learnt that if I tie my happiness to outcomes I will never be happy. It is easy to think we can only be happy once certain circumstances are reached. Life rarely unfolds the way we want, so by thinking happiness is this all encompassing state of mind that will magically descend on when we reach x, y and z, we are likely to live our lives in a constant state of dissatisfaction. In my experience, happiness is often small and fleeting, but once I started looking for those moments – and being grateful for them – the overall quality of my life got so much better.
The third thought that has given me some comfort is the realisation that the flipside of this fear really is love: We do not fear the loss of those who we do not care about. The reason why I am afraid is because I have this little person in my life who has changed my life and for whom I feel limitless love. And having such love in my life can only be a blessing.
P.s. Picture of Freya washing her bike. We have been advised to self shield for the next 3 months, which means the only outside area Freya can go to is our back garden. It’s going to be a long slog at home, but on sunny days like this we really can’t complain!